Pulmonary Embolism Support Group

By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.

My Young Experience

I am 21 years old (just turned in September) and recently suffered a Pulmonary Embolism, originated from Deep Vein Trombosis. I live in Portugal, where healthcare is "free" but in some ways lacking in quality of treatment and resources.

Here's my story:

First I felt a pain in my left leg. It started on my hip and got worse if I moved it. I didn't pay any attention to it, thinking it was Sciatica. After 10 days, it went away... and I forgot about it.
For weeks I felt strangely tired. With each day my tiredness grew. Small efforts left me exhausted, panting and with my heart beating wildly.
I went to my GP. Those are the worst kind of doctors out here. He didn't hesitate to brush me off and blame it on anxiety, sending me away.

My symptoms got worse. A week later I woke up one morning with excruciating pain on the right side of my upper back. I went to the hospital's Emergency Department.

The first doctor that saw me was skeptic, asking if I didn't have a flu (dumb question!). He finally asked for a chest X-ray. After seeing it he became worried and told me it was something complicated. He also forbid me to walk any more and use the wheelchair instead.

After a long wait of 3 hours, I had another exam... a CAT scan. They had to inject some fluid before it, and the clumsy doctor ended up bursting 4 of my veins before getting it right. The whole stress of the situation led me to break down in tears.

The CAT scan determined I had a Pulmonary Embolism. They rushed me to do a echocardiogram. The doctors were amazed at the extent of damage in my heart. I only perceived that the pulmonary artery was really enlarged, but there was more.

I left that room in a hospital bed, rushed to the Intensive Care Unit. Immediately I had a bunch of doctors and nurses asking questions and connecting me to machines, starting me on thrombolytic therapy.
While there, my "forgotten" leg pain came back and I told the doctors about it. My blood pressure was through the roof, my pulse was quick and I had a low fever, causing the machines to constantly beep. They made me wear anti-thrombolic stockings.

24 hours later I was transferred to another unit, not much different. I was still constantly monitored and couldn't move. There I had another breakdown and cried one night. I spent 4 days there, bedridden. Finally my BP stabilized and they allowed me to sit on a chair. I was tranferred to a normal hospital room.

My recovery finally started showing. I could finally sit on the armchair by myself. Gradually my shortness of breath improved. 2 days later they allowed me to walk to the bathroom. My legs were wobbly.

On the 7th day of my hospital stay I finally reached a reasonable O2 saturation and stopped the oxigen. That day my INR also finally reached the therapeutic level (2,8). I was discharged.

I couldn't believe I was outside. Actually, I was really scared. Was I discharged too soon, I thought? The first few days I felt weak and scared, but gradually improved. Often I slept 12 hours a day. One week after being discharged I returned to my classes, just for one day. I felt fine during the day but exhausted at night and it was difficult for me to wake up really early the next morning.

A day later I caught the flu, and it hit me hard. In fact, 4 days later it's still bad. Let's hope it doesn't last much longer.

In short:
- 7 days in the hospital
- 2 weeks since release

My indications when leaving the hospital were simple: wear compression stockings (knee length) class 3, take Warfarin (one pill, 5mg a day), do INR tests every week and call if the level isn't between 2 and 3, do a few exams (Doppler, echocardiogram, echography, ...) -- come back for a follow-up 1 month after my discharge.

The doctor said I could re-start activities as soon as I felt capable to. She recommended moving around a bit, because it would help blood flow and speed recovery. I just needed to pay attention to my body and rest when needed.

I should also watch my diet, since vitamin K would interfere with Warfarin... I shouldn't change my usual diet and insert too many vegetables. Plus (and this was stressed from day 1), I would never take the birthcontrol Pill again.

This was a really scary experience for me. After my diagnosis I was scared of falling asleep each night... even more after my discharge. I received a lot of support from friends and family, but I think they often understate my condition and brush it off now as something of the past.

Before all this happened, I was the healthiest person ever. I ate healthy, exercised every week, didn't smoke or do drugs. I'd never had a serious disease nor had anyone in my family. My blood sugar and my cholesterol levels were always perfectly normal. Every year I had regular check-ups and tests. I was a blood donor!

It was a very unexpected experience. One I won't forget as long as I live.

Welcome to our lil world. Sorry you had to join us.
I don't know if your dr told you or not but you are no longer a blood donor.
There are some really smart and wonderful people on here. Feel free to ask and you will usually get some great answers.

Welcome Carina. Glad you found us here, you will find plenty of support from people that actually understand all the strange things that come from this experience. I know that I'm still struggling with fear every night when I go to bed as are some others here. Listening to meditations or music may help.

I suffered similar symptoms for about 4 weeks prior to admission to the hospital - fatigue, shortness of breath, over-all exhaustion feeling; After all was said and done, I was diagnosed with DVT left leg, Atrial Fib and bi-lateral PE.

With time, things will get better, old activities can be resumed, you learn to separate reality from hype in medical advice...

You mentione your 'free but lacking' health care system in Portugal...here is how it worked for me in America, with insurance, where we are daily reminded of the horrors of 'free' health care:

Sat in the ER for 12 hours, unable to breath or communicate, before being seen. At one point I was told I was 'next in line' as soon as the nurses got back from lunch. This was not to be the case.

Someone got bored, decided to give my an EKG, which showed I was in A-fib. Always had a clean EKG in the past.

Admitted into hospital at midnight (I arrived at 10:20 a.m.). I still could not breath and had uncontrollable coughing. I was told no medication for the cough could be administered until the hospital physician saw me - he comes around once every 24 hours.

Day 2, they decide to keep me another day, give me anti-biotics for my 'pneumonia' but forget to write a prescription for cough medicine. Oh well, it's only another 24 hours until next rounds!

Day 3, they decide maybe a CT scan of my lungs might be in order, and finally get around to it on day 4 of my hospital stay. Of course, the PE is seen and the hospital goes into panic mode (or, to be a bit cynical, into 'anti-law suit' mode).

Fortunately I had been on Coumadin and some kind of belly shots since day 1 due to A-fib.

I'm completely in favor of a free healthcare system. Unfortunately, for it to work, hospitals must adopt a more efficient work method. Here in my country most hospitals are understaffed but they still get the job done. In the ER this success comes mostly from a good triage system (we use Manchester's). When I arrived in the ER and explained my problem, they established me as a priority and I was seen by a doctor just 10 minutes afterwards. They have at least 3 doctors 24/7 to evaluate patients and direct them to other units if necessary.

Here's what I spent during this whole ordeal:
- 10 for going to the ER
- 100 (for hospital stay &amp; all the exams during it)
- 40 for the compression stockings
- 1 for each box of Warfarine (containing 60 pills) -- even I couldn't believe it was that cheap.
- 1 for each weekly INR test

Soon I'll have to pay 80 for the Doppler, since it's in a non-government friendly clinic. But 99% of the time I usually only pay 5 at the most for any exam I do.

Welcome, Carina. So sorry that you have been suffering. We've all had all sorts of experiences with this condition. It's, as many here will tell you, a real roller coaster. The falling asleep anxiety is common--I'll bet that most of us have had it. I still do (after 3 months). I still wake up at night sometimes just feeling anxious. It's natural to feel this way after such a traumatic event. This site is great--people will give you the benefit of their own experience. There's no substitute for that--even the doctors don't really understand a lot about the actual experience of PE survival. They treat you by the book, but here you'll get reassurance, support, and advice that will really make you feel better!

I will be 21 tomorrow. When I called 911 the EMT told me it may be the flu. I went to the hospital anyway. Luckily I did. If I hadn't I would still be at home in pain cluless or worse. Being so young it is scary and plus I have a 12month old daughter.

It's been almost 4 months since I came out of the hospital. Yesterday I had my second follow-up appointment with my doctor (her specialty is Internal Medicine).

During my hospital stay they never fully explained to me the gravity of my situation (they probably didn't want to stress me even more). After coming home and talking to my doctor I realized how close to death I came. I had a massive bilateral pulmonary embolism... even the main pulmonary arteries were blocked.

My recovery was considered unbelievably fast. My heart was back to normal after 2 months (completely recovered from severe Pulmonary Hipertension). I did a CAT scan 3 months afterwards which revealed an almost full recovery of the lungs.

I don't have any considerable lasting side-effects. Other than the normal near-death experience trauma, I was physically fine. About 3 weeks ago I started feeling some discomfort in my chest, but that might be related to stress (college exams, the drama!).

The doctor decided to keep me on Warfarin for a full year. Afterwards we'll do some tests to check for genetic anomalities.

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